If You’ve Lost Hope, Read This

I should’ve died years ago, but I’m too damn competitive.

A doctor said I’d cross my high school graduation stage in a wheelchair, toting supplemental oxygen. “Challenge accepted,” I thought. Weeks later, I walked with my head held high and unobstructed by oxygen tubing.

When I lost my mind due to ICU delirium four years later, nurses strapped me to my bed. Once I recovered, I remarked that it was my opportunity to prove I could beat cystic fibrosis with my hands “tied behind my back.”

That cockiness is an act — my disease terrified me — but that act got me to where I am today. Fake it til you make it.

My competitive attitude can be a fault, but I attribute my survival to it. Survival of the fittest, right? I’m not fit, but when growing up, I tried being other types of “–est”: the smartest, bravest, toughest version of myself. Competitiveness boosted grades despite having a fraction of peers’ classroom time, it preserved sanity when imprisoned in tiny hospital rooms, and it taught me to walk when sepsis melted my muscles. Competitiveness helped me survive slow, slow suffocation.

I neglected day-to-day disease maintenance, but the moment someone doubted my will to overcome, I kicked into high gear. I love proving people wrong: I strive to thrive because people predicted I’d barely survive, if at all.

When they said no, I said yes.

I’ve overcome many ordeals unexpectedly, whether through determination, dumb luck, or miracles. These snippets might comfort you.

Maybe Mom and Dad were tempted to surrender to despair when reading their son might not live to adulthood. Instead, they sacrificed limitlessly to get me to today, 27 years later.

I almost surrendered when instructors said I should “take a hit” when hospitalized; many refused to provide makeup work and exams. Instead, I graduated with two bachelor’s degrees and a 3.8 GPA.

I almost surrendered when nephrologists said my kidneys suffered irreparable scarring. Instead, I prayed relentlessly and suddenly my kidney function normalized — doctors have no explanations.

I kept my hope and my $20, and got straight As that semester. (Screenshot via Brad Dell)

I almost surrendered when specialists said we’d run out of options for Pseudomonas treatment. Instead, I researched for days to find alternative treatments that likely suppressed the superbacterium for two years.

I almost surrendered when multiple transplant centers rejected me, doubting I could survive the transplant surgery due to my health complexity. Instead, I had a rapid recovery after UCSF blessed me with new lungs four years ago.

I almost surrendered career goals when told working full time is difficult for transplant patients and that journalism was unlikely to yield adequate health insurance and copay funds. Instead, I met a CEO who peered through the professional risks of my disease to see my potential, and reward it.

I almost surrendered my life when audiologists declared me permanently Deaf. Instead, I pushed through two years of health obstacles to get cochlear implants, then surprised audiologists with my ability to hear all tones in music, which is uncommon.

Music helps me to process and heal from trauma, because yes, in each victory I lost parts of myself that I grieve today. This life is painful.

We’re made of tough stuff.

Conveniently, many people with disease or disability are born tough as jerky, or like me, are competitive enough to become tough. Maybe God thought us too mighty, so he slowed us down to give everyone else a chance to catch up. Har-har.

As the director of columns at Bionews, this website’s publisher, I’ve read countless fascinating stories about patients overcoming “impossible” odds. Many are adults who were “supposed to” die as infants. Some hold master’s degrees when they were “supposed to” go no higher than a high school degree. Some have thriving marriages when they were “supposed to” see only romantic ruin post-diagnosis. Some, like me, were told they probably couldn’t hold a job, yet now serve as division directors at Bionews.

Sometimes I take those columnists’ stories for granted because I read similar tales so often. That’s my point, sort of. Miracles, the defiance of odds, aren’t that rare. At least, not anecdotally. I’m not claiming statistics are invalid, but we are more than numbers — we are anecdotes running on the fuel of hope. In the last section, I listed eight personal defiances, and your next one could be around the corner.

Doctors share probable prognoses, occupational therapists share the trials of balancing work with disease, counselors say interabled relationships are hard. They’re doing their jobs. It’s our job to hope they’re wrong, to continue pushing when all seems lost. Take professionals seriously, but never let them extinguish hope.

We won’t prevail in all trials, but let’s shoot for hope rather than surrendering to expectations. Remember that when science and knowledge fail, determination can prevail. And when determination falters, well, everyone loves a comeback miracle story. You never know.

Challenge accepted?

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.